LEADER 05895nam 2200757 a 450 001 9910791829703321 005 20230725021157.0 010 $a0-309-18646-3 010 $a1-282-94865-2 010 $a9786612948657 010 $a0-309-16217-3 035 $a(CKB)2560000000070092 035 $a(SSID)ssj0000468472 035 $a(PQKBManifestationID)11287073 035 $a(PQKBTitleCode)TC0000468472 035 $a(PQKBWorkID)10507233 035 $a(PQKB)11046630 035 $a(MiAaPQ)EBC3378712 035 $a(Au-PeEL)EBL3378712 035 $a(CaPaEBR)ebr10439392 035 $a(CaONFJC)MIL294865 035 $a(OCoLC)923282752 035 $a(EXLCZ)992560000000070092 100 $a20110114d2010 uy 0 101 0 $aeng 135 $aurcn||||||||| 181 $ctxt 182 $cc 183 $acr 200 10$aDirect-to-consumer genetic testing$b[electronic resource] $esummary of a workshop /$fMary Fraker and Anne-Marie Mazza, rapporteurs ; Institute of Medicine and National Research Council of the National Academies 210 $aWashington, D.C. $cNational Academies Press$d2010 215 $axii, 93p 300 $a"Committee on Science, Technology, and Law Policy and Global Affairs, Board on Life Sciences, Division on Earth and Life Studies, Forum on Drug Discovery, Development, and Translation, Board on Health Sciences Policy, Roundtable on Translating Genomic-Based Research for Health, Board on Health Sciences Policy, National Cancer Policy Forum, Board on Health Care Services." 311 $a0-309-16216-5 327 $aIntroduction -- Scientific foundations for direct-to-consumer genetic testing -- Personal and social issues -- Research and medical issues -- Impact on health care and public health -- Current legislative and regulatory framework in the United States -- Areas for further study. 330 $a"Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community."--Publisher's description. 606 $aMedical genetics$vCongresses 606 $aGenomics$vCongresses 606 $aGenomics$xMoral and ethical aspects$vCongresses 606 $aGenetics$xMoral and ethical aspects$vCongresses 606 $aHuman genetics$xMoral and ethical aspects$vCongresses 615 0$aMedical genetics 615 0$aGenomics 615 0$aGenomics$xMoral and ethical aspects 615 0$aGenetics$xMoral and ethical aspects 615 0$aHuman genetics$xMoral and ethical aspects 676 $a616/.042 701 $aFraker$b Mary$01520175 701 $aMazza$b Anne-Marie$01520176 712 02$aInstitute of Medicine (U.S.).$bForum on Drug Discovery, Development, and Translation. 712 02$aInstitute of Medicine (U.S.) 712 02$aNational Research Council (U.S.) 712 02$aNational Research Council (U.S.).$bCommittee on Science, Technology, and Law. 712 02$aNational Research Council (U.S.).$bBoard on Life Sciences. 712 02$aNational Research Council (U.S.).$bDivision on Earth and Life Studies. 712 02$aInstitute of Medicine (U.S.).$bBoard on Health Sciences Policy. 712 02$aInstitute of Medicine (U.S.).$bRoundtable on Translating Genomic-Based Research for Health. 712 02$aNational Cancer Policy Forum (U.S.) 712 02$aInstitute of Medicine (U.S.).$bBoard on Health Care Services. 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910791829703321 996 $aDirect-to-consumer genetic testing$93758723 997 $aUNINA